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  • Writer's pictureNicole Will

"The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It"


Natalie Elliott Handy confessions of a reluctant caregiver




What does it mean to live a good life when the very essence of your memory and autonomy begins to fade? In a world where aging is inevitable, the challenges of neurodegenerative diseases like Alzheimer's pose profound questions about identity, care, and dignity.


Today, I'm honored to have a conversation with Dr. Jason Karlawish. He is the author of The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. As a professor of medicine, medical ethics, health policy, and neurology at the University of Pennsylvania's Perelman School of Medicine, Dr. Karlawish's work transcends the traditional boundaries of science and ethics, offering new perspectives on how we care for those living with Alzheimer's and other forms of dementia.


His journey has led him to pivotal roles at the Alzheimer's Disease Research Center and the Penn Memory Center, where he provides leadership in the Penn Program on Precision Medicine for the Brain (P3MB). He addresses the ethical challenges of aging brains and explores how diseases like Alzheimer's and Lewy body disease affect autonomy and self-determination through innovative projects. Dr. Karlawish is reshaping how we understand and support the Alzheimer's community.


His essays on ethics and aging have appeared in publications such as The Hill, The New York Times, The Philadelphia Inquirer, STAT News, The Washington Post, and more. In our conversation today, we discuss the evolution of Alzheimer's from a misunderstood condition to a widely recognized crisis, the vital role of caregivers, and the transformative impact of storytelling and advocacy in changing the narrative of dementia care.


Dr. Karlawish's insights not only highlight the complexities of Alzheimer's disease but also celebrate the human spirit's resilience. Join us as we discuss the journey of caregiving, the challenges and opportunities in research and policy, and how we can collectively foster a society that supports all aspects of aging with grace and dignity.


Thank you, Dr. Karlawish, for your compassionate care, for infusing humanity into your practice, and for engaging in this meaningful conversation with me. I am grateful for your dedication and advocacy. Thank you!



Listen to our episode HERE.



Dr. Karlawish shares about:

  • The impact of Alzheimer's on individuals' autonomy and identity, shedding light on the personal challenges faced by those living with the disease.

  • Innovative approaches to Alzheimer's care, emphasizing the importance of dignity and personalized treatment in managing the condition.

  • Insights into his interdisciplinary work at the University of Pennsylvania, where he blends medical ethics, health policy, and neurology to advance Alzheimer's research and care.

  • An examination of the evolving perception of Alzheimer's from a rare disease to a global crisis, highlighting the role of science, culture, and politics in this transformation.

  • The power of storytelling and advocacy in changing the narrative around dementia care, emphasizing the vital role of caregivers and the broader community in supporting affected individuals.



About Dr. Jason Karlawish

 

Jason Karlawish is a professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania Perelman School of Medicine. He was educated at Northwestern University, the Johns Hopkins Medical Institutions and the University of Chicago. He is co-associate director of the Alzheimer’s Disease Research Center and co-director of the Penn Memory Center, where he cares for patients and their families. These Centers are internationally recognized leaders in the discovery of biomarker diagnostics and their translation and interpretation into policy, practice and society.

 

Dr. Karlawish directs the Penn Program on Precision Medicine for the Brain (P3MB). The Program examines the bioethics of aging with a focus on diseases of the brain such as Alzheimer’s disease and Lewy body disease. The program assembles scholars in anthropology, law, nursing, philosophy, psychology, and public policy to investigate how neurodegenerative diseases impact a person’s capacity to self-determine their life and to discover conceptual and practical interventions to enhance self-determination.

 

Notable studies have addressed the interrelated challenges created by impairments in decisional capacity and the sometimes hidden-in-plain site social and policy barriers to exercising decision-making. This work includes development and testing “mobile polling” in residential long term care settings to foster the right to vote and development of the Assessment of Capacity for Everyday Decision making, or ACED, tool to assist in assessing decision-making skills. Responding to transformations of the definition and staging of Alzheimer’s disease, P3MB has developed biomarker disclosure practices and discovered insights into how learning a biomarker result impacts both patients and their loved ones. Work recasting dementia as a progressive disorder of consciousness has opened up a host of innovations in how we can live with and care for people with these diseases. These include refining the legal concept of supported decision making to apply to the care of persons living with neurodegenerative diseases.

 

A writer, Dr. Karlawish is committed to translating science into society. He’s the author of The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont. His essays on ethics and aging have appeared in publications such as The Hill, The New York Times, Philadelphia Inquirer, StatNews and The Washington Post.

 

To learn more about his research and writing, visit www.jasonkarlawish.com.

 

 

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We are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. willGather has taken care in selecting its speakers but the opinions of our speakers are theirs alone. Thank you for your continued interest in our podcasts.


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